Continuing our series of posts, in collaboration with the European Association for Palliative Care (EAPC) Paediatric Taskforce, about children’s palliative care with examples of initiatives that aim to improve care for children, young people and their families.

When it comes to awareness and provision of children’s palliative care services, Norway is sadly far behind comparable countries in Europe. Approximately, 4,000 children in Norway would benefit from palliative care but there are currently no children’s hospices. A pilot project for palliative care education will start in January 2017 but there is currently no specialised paediatric palliative care education. More than 1,500 healthcare professionals have attended courses and conferences and several adult palliative care education programmes now include modules on paediatric palliative care.

But things are changing – and much of this is down to seven years of hard, strategic work from a small office in Kristiansand, Norway.

This spring, the association changed its name to FFB – Foreningen for barnepalliasjon (the Norwegian Association for Paediatric Palliative Care). We have developed from an enthusiastic group into a leading expert in paediatric palliative care; politicians and authorities alike listen to us and seek our advice. Proof of this came when Natasha, our CEO, was appointed by the government to represent children’s palliative care in the Norwegian Official Report (NOU) on palliative care.

Norwegian translation of the ‘Oxford Textbook of Palliative Care for Children

Education – the key to improvement

In 2016, we worked on a wide range of tasks, our most important contribution being the publication of the first comprehensive textbook on children’s palliative care in Norwegian. The translation into Norwegian of the ‘Oxford Textbook of Palliative Care for Children’ should enable dissemination of knowledge at all levels and multidisciplinary education within children’s palliative care.

We have also arranged several educational gatherings at colleges and universities to empower and educate health personnel across the country. This work will continue for some time to come.

In August, we participated in Arendalsuka, an annual forum where national delegates in politics, society and industry meet each other and the public to debate and develop future policy. Arendalsuka is a politically independent forum that helps to strengthen our democratic powers. We had our own stand for the whole week, and almost all the leaders of the political parties dropped by for information. We also had a stand in Kristiansand to mark World Hospice and Palliative Care Day on 8 October, where we talked to people and gave away anticipatory grief ribbons, balloons and brochures.

Developing international links

We are developing a strategic plan for fundraising to support our work in building the first children’s hospice in Norway. As part of this process, we visited the wonderful children’s hospice, Regenbogenland, in Düsseldorf, Germany. They put on a great programme for us; it was an enlightening and powerful experience for those of us who had not seen a children’s hospice before and will contribute greatly as we plan our own hospice. We have also developed a link with Asociatia Lumina, an organisation that supports palliative care for children and young people in Romania. They visited us in August, and we will visit them next year.

Anticipatory grief – workshop and book

For the first time, we arranged an anticipatory grief workshop for parents in September that made the national news. Eleven parents from across Norway enjoyed a weekend of treats including a spa, Yoga, art therapy and Segway trips. New friendships were also created. Stories, quotes and pictures from this weekend form the basis of a new book about anticipatory grief that we hope will be published later this year.

Keep in touch

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